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How to Start Your Own Advocacy Group

Last updated: December 2022

Advocacy groups are dedicated to a specific cause. They are made up of motivated members who come up with plans to make changes at the local, state, or even national level.1

When more people are affected by an issue, there tend to be more groups to support them. However, issues that impact fewer people, like rare diseases, may have fewer existing groups. In these cases, you may need to start your own group to advocate for change.

Tips for starting an advocacy group

Change can be slow, and starting a group can feel overwhelming. But there are some basic steps to starting an advocacy group. Follow these steps to make the process feel more manageable.

1. Research what is out there already

First, find out which groups already exist and what they are doing. There may be a group in the next state over or a national group working on things that matter to you. Reach out to these groups to ask whether you can partner with them.1-3

This tactic can be especially helpful for addressing large-scale issues beyond your local community. If you find another group that is similar to, but not exactly, what you are looking for, you can talk with them to learn about their challenges and successes.1-3

2. Form your core group

Your core group members likely will be people who are most affected by the cause. Or they may be the most passionate about making change. They may also be the people in your local community, state, or beyond who have the most power to make that change.1,2

Partnering with other people living with the rare disease you are advocating for and their family members is a great place to start.

Other options for partners include:1,2

  • Doctors who treat the condition
  • Local government officials, like your mayor or city council members
  • Other volunteer groups in your community

There are no rules about who you need to include. Look for people with diverse backgrounds and attitudes. As long as they are willing to help or point you in the right direction, it does not matter who they are.1

3. Have your first meeting and set realistic goals

Once you have a core group, find a time to meet and set goals. To find the best approach for your team, talk with each member about their schedule, desire to meet in person or virtually, and expectations. Being flexible about meeting location, format, or time can help bring more people together at once.1,2

When you do get together, make it a priority to set a common goal. Ask people to talk about their experience with the issues at hand and what changes they want to happen. Then agree on an overall goal.1,2

After you have an overall mission or vision, you can set smaller goals as a team. Change does not happen overnight, and it is important to stay motivated as a group. Keep the energy up by setting smaller milestones to work toward and celebrate. Help members feel respected and heard along the way by creating a list of ground rules for good meeting discussion.1

4. Assign roles and go public

To achieve the goals of your group, each member needs to have a clear direction. Taking into account everyone’s time commitments and skills, create roles. These roles can be assigned or voted on by the group.1,3

Focus roles around:1,3

  • Helping craft the group's plans
  • Carrying out those plans
  • Keeping the group organized and on track

Roles may include:1,4

  • President
  • Note-taker (secretary)
  • Treasurer
  • Social media manager
  • Other titles based on member interest

After everyone has an idea of where they fit in, you can make a social media page, contact local news outlets, or communicate your efforts to the public in some other way. This can help recruit volunteers and donors.1,2

5. Secure funding

One of the biggest barriers to getting things done is money. Your group will most likely need to host events and raise funds to achieve some of your goals. One option for raising funds is contacting private businesses that might have an interest in supporting your cause.1-3

You can also look to public sources of support like national organizations related to your rare disease or other health-related government funds. Donors can also be members of your local community.1-3

Donors are a big part of keeping advocacy groups running. So, it is important to maintain their support over time. Keep donors in the loop about how their money is making a change. Make their names public. Help them feel valued by hosting events or sending gifts to thank them.1

6. Grow your group

After you have laid the groundwork for your advocacy group, keep pushing forward. You can build momentum by hosting events, adding members, or setting more goals. If your team is especially dedicated, consider formally turning your group into a nonprofit. This can take a lot of effort and be a long process, but may be worth it based on your group’s long-term goals.3,4

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RareDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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